https://www.breatheforpcd.com/triedtipsandtricks daily 0.75 2024-08-23 https://www.breatheforpcd.com/triedtipsandtricks/october-is-pcd-awareness-month monthly 0.5 2024-08-23 https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/64f31101-8e39-41c7-a252-4773d14dd227/IMG_2544.jpg Tried Tips & Tricks - October is PCD Awareness Month! https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/844c69aa-4768-46c9-a2ae-77a12d60acd0/IMG_2540.png Tried Tips & Tricks - October is PCD Awareness Month! https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/fe3a4ea0-368c-43cb-a794-acb944a8bca1/IMG_2549.jpg Tried Tips & Tricks - October is PCD Awareness Month! https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/855da9a3-4872-4e15-ad15-04b0802ced7f/IMG_2553.jpg Tried Tips & Tricks - October is PCD Awareness Month! https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/09196af4-33c8-46a9-9b32-d05007a301ca/IMG_2555.jpg Tried Tips & Tricks - October is PCD Awareness Month! https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/8645cfef-dbcf-49df-acc9-d7abd0310cff/IMG_2554.jpg Tried Tips & Tricks - October is PCD Awareness Month! https://www.breatheforpcd.com/triedtipsandtricks/school-with-pcd monthly 0.5 2024-07-29 https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/a2d679bf-f920-44da-b52f-5befd9ea33cd/Screenshot+2024-07-26+at+2.12.31%E2%80%AFPM.jpeg.png Tried Tips & Tricks - School with PCD By the time he was to begin his full time school career away from mom, I actually think he was ready to do it on his own. Of course, I had to set in place some structures that could help him succeed. This included: Setting up a 504 Plan A letter to the school to explain PCD (written by the PCD Foundation) A list of classroom accommodations A letter to the parents in Elliot’s class (I took bits from the letter to the school and personalized it to target the parents of students). I only sent this out in preschool and kindergarten. With my son’s permission, I went into the classroom and spent about 10 minutes explaining what PCD is, and the things that they will see Elliot doing (coughing, coughing and spitting, blowing his nose a lot, moving away from them if they are sick or have a cough) https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/06d331a5-ce16-46d0-a142-0b71b56c6909/image1.jpg Tried Tips & Tricks - School with PCD - It was only five years ago that we sent our baby living with PCD off to kindergarten, and THIS mom ugly-cried for about a week. Don’t get me wrong. There were moments of excitement that lived in the freedom that awaited me. AND there was also pure terror and heartache in knowing we now had to trust the school system to not only educate our kid, but also keep him safe from germs and bad air, remind him to blow his nose, to cough until he completely clears out his lungs, spit it out, wash his hands, and basically to fill in for ME, his highly concerned and doting mother. Keep in mind I also ugly-cried when his big brother WITHOUT PCD went off to Kindergarten as well. https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1722208380275-YQXPW0XO19CGO4MOYVSM/452528646_27128324526766287_2465301139878260463_n.jpg Tried Tips & Tricks - School with PCD https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1722208380360-KRBS0K8HX4FP02NGG680/Photo+Jul+28+2024%2C+4+40+23+PM.jpg Tried Tips & Tricks - School with PCD https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/e0b900c2-c339-4b4b-bb24-3e6260d8409b/Photo+Jul+28+2024%2C+5+44+52+PM.jpg Tried Tips & Tricks - School with PCD - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.breatheforpcd.com/triedtipsandtricks/camping-with-pcd monthly 0.5 2024-06-24 https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/f322dd2a-9910-4edf-b926-e0fe57288a32/448636117_764293128951763_7729364062974288659_n.jpg Tried Tips & Tricks - Camping with PCD - Make it stand out We always use a brand new ziplock bag to pack our sterilized nebulizer parts. https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1719181544577-FYKO2YJFEHQ2JSQEYF5X/448815400_1008420884324889_25360787175790479_n.jpg Tried Tips & Tricks - Camping with PCD https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1719181618723-BDMCN6UTOL5Q25UQX8GS/448693941_1623522891587698_3210501560864928254_n.jpg Tried Tips & Tricks - Camping with PCD https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1719181651299-8H28LEHMGH1GC1SNUX4J/448640285_1012628260264103_6208253010945730630_n.jpg Tried Tips & Tricks - Camping with PCD https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1719181668067-0MWVRQ8RL2YTMY0TZDJC/448690724_1015850170147003_7812915872753119061_n.jpg Tried Tips & Tricks - Camping with PCD https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1719181682773-AQHEWEBY0PY0G8W3NG3J/448691136_1159004822105354_750362004954558186_n.jpg Tried Tips & Tricks - Camping with PCD https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1719181699825-ZGDT643X8L30J1JTHYVK/448586019_1531656120752313_8040543603098525061_n.jpg Tried Tips & Tricks - Camping with PCD https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1719182028116-8L4ZD3NYXOWFICZSIWJH/448779258_1133459347944988_1717022527617025897_n.jpg Tried Tips & Tricks - Camping with PCD https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/ae2675d5-0d72-4828-a3cb-816dcbb570ca/448636335_317874174710953_7490544673047532634_n.jpg Tried Tips & Tricks - Camping with PCD - Make it stand out Then we do our best to fit it all in one bag! Don’t forget to pack a box of kleenexes too…but that goes without saying. :) https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/c8c71447-bbdf-4a8d-9615-38d01ef8d208/448638885_971513017909107_4261093547678836244_n.jpg Tried Tips & Tricks - Camping with PCD - We got this guy on Amazon. It plugs into your cigarette lighter in the car. This way we can nebulize in the car. *If you click the link for this power inverter to order your own…I may receive some kickback from Amazon that I will use to help pay for my yearly cost of this website. https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/b3555ab8-c44a-4e99-8429-1d981e0028d5/448487053_1012992790429811_5518757075495921233_n.jpg Tried Tips & Tricks - Camping with PCD - Don’t forget to pack the nebulizer! https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1719197675699-DT7SUD8MPWZD37J7D4RV/448484464_1532112787706070_433621729173398098_n.jpg Tried Tips & Tricks - Camping with PCD https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1719197675604-3TPVTI9QMAPDVVXE5Q7H/448636118_858071552873091_786583975223666189_n.jpg Tried Tips & Tricks - Camping with PCD https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1719197676981-46W6AD0IBGJ2D9FRA2WI/448669177_351488241308022_6628970646243949718_n.jpg Tried Tips & Tricks - Camping with PCD https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1719197677778-5A0WM6L73VWKFK48O77F/448766324_438972335690586_5764216738451063608_n.jpg Tried Tips & Tricks - Camping with PCD https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1719197678017-JCSK61MLWNJ05DYCH68W/448800515_1163657184880677_8269963192950393972_n.jpg Tried Tips & Tricks - Camping with PCD https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1719197678884-MTNPTGOLMYW0RH9XM99K/448921101_1680225699389449_6130105104323721227_n.jpg Tried Tips & Tricks - Camping with PCD https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1719197679148-O01FCQO28UQE3KAIUX5Q/448931818_803002605278512_8941451150567058583_n.jpg Tried Tips & Tricks - Camping with PCD https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1719197680686-C2OFG5GNQFHHQL4AOPK6/449080812_839493584727170_8708367738201740047_n.jpg Tried Tips & Tricks - Camping with PCD https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/5f909d98-b2b6-4c2e-b475-b07285c04f9f/448759251_391270713947766_6046354125981365605_n.jpg Tried Tips & Tricks - Camping with PCD - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/6f3f0d4b-634e-460c-8f68-ad8a3ab3c3d6/448653167_1013862237017852_2034450031180408062_n.jpg Tried Tips & Tricks - Camping with PCD - Let’s start with the fact that we bring our own fire-pit! Yep. Every time we go camping, we pack our own portable, smokeless, propane fire pit. We got ours at Costco a few years back and haven’t looked back. We can enjoy cooking hotdogs and s’mores over a beautiful fire AND also completely avoid the stress that comes with dodging smoke. https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/a5ea3b14-cd52-4e40-925e-2970915c958f/448762113_3746782258902605_1148887884235477513_n.jpg Tried Tips & Tricks - Camping with PCD - Make it stand out This is how we pack our meds! This is what we refer to as our “Clap Bag” (refer to previous blog post, Breathing Treatments for the Wee Babes. ), but it is technically a make-up/toiletry bag that I got at Target 10 years ago. The alcohol spray he uses to clean his Flonase squirter after each use. The spacer for the inhaler we also clean when we get home from the trip. https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/2d27f40e-c5ca-4408-b088-6d982e51c5d0/448732722_1234798607882033_9088667979331686555_n.jpg Tried Tips & Tricks - Camping with PCD - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/f7b36653-9240-4f26-8c49-82097bca6990/448689332_1742494522945682_8896805194880993726_n.jpg Tried Tips & Tricks - Camping with PCD - Thinking ahead… Thinking ahead, we always pack several ziplock bags that we label, “DIRTY,” to have a place to put them after they are used. https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/00e0ed9a-e3cc-468a-aeae-a93bae8498ac/448464766_1547525099165220_1584909991559372718_n.jpg Tried Tips & Tricks - Camping with PCD - Make it stand out Same goes for our sterilized sinus rinse bottles https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/ee92792b-fdc3-4554-ba5e-108084428803/448678604_959948149241283_2505377194371344520_n.jpg Tried Tips & Tricks - Camping with PCD - Make it stand out Be sure to pack enough saline packets for the sinus rinses that will be done (a few extra never hurts!), and enough vials of medicine for each nebulized treatment. https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/dc15bcdb-f447-4a59-bcb4-18b209a7310d/448770849_1599228264200607_1865929767239269175_n.jpg Tried Tips & Tricks - Camping with PCD - and the distilled water for the sinus rinses! https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1719176592783-804FW5YKJWYZKR0VMCEZ/449118935_1526711271274492_8020008099548198183_n.jpg Tried Tips & Tricks - Camping with PCD - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.breatheforpcd.com/triedtipsandtricks/pcd-resources monthly 0.5 2024-02-28 https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/c533e863-a12c-4f1a-90e8-a8140a4caf1b/Photo+Feb+28+2024%2C+4+25+37+PM.png Tried Tips & Tricks - PCD Resources - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/5b10c628-5f43-4317-a7f1-c4ba07eb0822/Photo+Feb+28+2024%2C+11+45+08+AM.jpg Tried Tips & Tricks - PCD Resources - I want this blog to be a working post that I add to and update as needed. I hope it will help parents facing the news of a PCD diagnosis or any person WITH PCD looking for more information and connection. https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1709150582569-8C0PACKOKV92049UMR81/Photo+Feb+28+2024%2C+12+21+09+PM.jpg Tried Tips & Tricks - PCD Resources - United States https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1709150936649-IM1VW0VQ39ZJ9WQOAZJN/Photo+Feb+28+2024%2C+1+08+13+PM.jpg Tried Tips & Tricks - PCD Resources - Germany https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1709151236867-DL8OFMID0SXLA5O11M3Z/Photo%2BFeb%2B28%2B2024%252C%2B1%2B11%2B31%2BPM.jpg Tried Tips & Tricks - PCD Resources - UK https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1709151862788-TZ9S43XJRVN9FI9UDPG9/Photo+Feb+28+2024%2C+1+23+29+PM.jpg Tried Tips & Tricks - PCD Resources - Australia https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1709151872552-PTVUTXXW27YLQSX11KAV/Photo+Feb+28+2024%2C+1+22+11+PM.jpg Tried Tips & Tricks - PCD Resources - Italy https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1709155621994-XZ037Z0659F80LWYZX5B/Photo+Feb+28+2024%2C+2+25+41+PM.jpg Tried Tips & Tricks - PCD Resources - Spain https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1709156732905-UC8QV7JFENEZLCPPBEXF/Photo+Feb+28+2024%2C+2+44+26+PM.jpg Tried Tips & Tricks - PCD Resources - France https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1709156115221-WI0UACN6BP3DMONMXNF6/Photo+Feb+28+2024%2C+2+34+11+PM.png Tried Tips & Tricks - PCD Resources https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1709150582569-8C0PACKOKV92049UMR81/Photo+Feb+28+2024%2C+12+21+09+PM.jpg Tried Tips & Tricks - PCD Resources First of all, It is important to note that we live in the United States. So OUR go-to for information is the PCD Foundation. They are the basket that we put all our eggs in. The PCD Foundation was founded in 2002 by a mother of a child with PCD and an adult living with PCD. They now work with a board of directors, each directly affected by PCD, and a Medical and Scientific Advisory Council. Together, they work to find a cure for PCD. *I do not work for the PCD Foundation. I raise money for them. :) https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/2e0d06bd-8ac4-4198-afbf-a89e821eb94f/Photo+Feb+28+2024%2C+3+05+44+PM.png Tried Tips & Tricks - PCD Resources - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/866024ff-55e6-49c8-9445-c5554e1029e2/Photo+Feb+28+2024%2C+3+08+31+PM.png Tried Tips & Tricks - PCD Resources - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/6a7a026b-8d82-43a3-a916-a98fc03c6f01/Photo+Feb+28+2024%2C+3+18+09+PM.png Tried Tips & Tricks - PCD Resources - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.breatheforpcd.com/triedtipsandtricks/breathingtreatmentsfortheweebabes monthly 0.5 2024-01-10 https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/c57554e6-e032-4c23-881a-259501b1e6f3/413282203_320701527625413_8103108905443914627_n.jpg Tried Tips & Tricks - Breathing Treatments for the Wee Babes - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1704826752304-Y8HVQ0E5P0FPKVE015BG/414690352_897376698492999_4734092024196451089_n.jpg Tried Tips & Tricks - Breathing Treatments for the Wee Babes https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1704826752429-GB9RXZFMG3NN46X9ULWJ/416746031_2070387243305555_7512909436968293346_n.jpg Tried Tips & Tricks - Breathing Treatments for the Wee Babes https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1704826753619-BQATK0U7R3H5M81N7CDE/416808299_228556936965569_2322270822128596636_n.jpg Tried Tips & Tricks - Breathing Treatments for the Wee Babes https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/5ae0a3d9-9fa3-4b50-bf2c-b4e5b7823b15/416727595_764176525625543_902268329536942096_n.jpg Tried Tips & Tricks - Breathing Treatments for the Wee Babes - For Cleaning and Sterilizing Daily! Stainless steel bowl for soaking nebulizer parts Dish soap Clean, white paper towels Wabi Baby Sterilizer and Dryer (Amazon) Distilled Water (We buy at our grocery stores) Chlorox wipes (for the counter and sinks to prevent infections and reinfections https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/2e943f83-5e31-4386-a6f8-70c922a04f4b/415204598_364258312882391_3332905525230059328_n.jpg Tried Tips & Tricks - Breathing Treatments for the Wee Babes - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/c856ec56-a75b-4009-889c-4f7e6e1a046f/416650070_1466562187240237_7706389417559073866_n.jpg Tried Tips & Tricks - Breathing Treatments for the Wee Babes - Make it stand out In sharing with you the links to some of the products on the supplies lists above, I may receive a small commission from Amazon for the referral link. I felt weird about doing this and considered very strongly to NOT sign up for the Amazon affiliate program. But I wanted to share with you all where we get these items and which exact items we use. Also, I figured I could use any money made to pay for the cost that we have been paying out-of-pocket for this website. $168 a year. If any extra is made….which I doubt…we will donate it to the PCD Foundation. https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/299824e7-7b70-4583-a9c9-c39cbca2da10/treatment2.jpg Tried Tips & Tricks - Breathing Treatments for the Wee Babes - When we first found out that our one month old baby had Primary Ciliary Dyskinesia and that it causes progressive lung disease, everything seemed impossible. How could this happen ? (answer: genetics) Why did this happen to OUR baby??? (answer: also genetics) How are we, as his parents, going to do this?? (answer: I’ll tell you how in this blog) How is Elliot going to handle this when he gets older? Will he be responsible enough to do all the work it takes to slow the progression of inevitable lung disease?? (Ooof. Future me will get back to you on this one.) https://www.breatheforpcd.com/triedtipsandtricks/ifihadme9yearsago monthly 0.5 2024-01-08 https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/773324d3-cc25-4472-9f31-966f48457e96/me+and+e+masks+black+and+white.jpg Tried Tips & Tricks - If I Had a “Me” 9 Years Ago - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.breatheforpcd.com/shirt-designs daily 0.75 2023-09-14 https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1613709504000-4B5GF3EC2EDD72MKKR3F/61099821_2318951288180420_9186834831672082432_n.jpg Shirt Designs https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1613707883381-6A6N0WB8SO54829ELXH4/19990460_1485905198151704_1695864439350245531_n.jpg Shirt Designs https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1613708144821-5E8IJSJ4IQISFE8WXXH0/71801609_2774829629195119_5695187262254350336_n.jpg Shirt Designs https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1613710907805-JT1Z11MF5BCWKGTQJ2HR/37884705_10216573310116070_7050798298013106176_n.jpg Shirt Designs https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1613711512517-CQXDVIYRPJUJ7FZT574O/ELLIOT%2BPUNCH.jpg Shirt Designs https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1613710064785-GQWQYVANJ2W56UOCP4A2/71833115_2559583564117190_4073160843938758656_n.jpg Shirt Designs https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1613751299627-KOF2DNMRENCVEKATUVBB/raretogetherdesign.png Shirt Designs https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1613750968535-RZK32QGK11A3I3MQHFI3/breath-text2.png Shirt Designs https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1613750471531-C41DX7DOZQJDPPSB9NB1/Elliot%27s+Hummingbird+with+white+background.png Shirt Designs https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1613755957490-XYH4U0U3A5KSUMGQM7SF/23031624_1593926560682900_5553117764546546431_n.jpg Shirt Designs https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1613754920651-1L15F1O8HXSNH769PYQN/145147492_1344917045888500_8436685735199003054_n.jpg Shirt Designs https://www.breatheforpcd.com/about daily 1.0 2024-06-24 https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1613695756917-R9XLCK850K47I25Z90OH/13000179_1027135747361987_6955110480553806141_n.jpg About - Breathe for PCD Campaign Breathe for PCD is one of many grassroots campaigns to further awareness and research opportunities for PCD. The lungs design was created to be a reminder to keep a heartfelt focus on the daily and long-term goal. Life. Health. All proceeds will go directly to the PCD Foundation. The hope is to raise money for PCD but to also spread the word on a rare disease that desperately needs attention. What began as a fundraiser, the Breathe for PCD campaign has exploded! There are currently over 2,000 Breathe for PCD products out there in the world spreading the word on PCD! When you get YOUR Breathe for PCD shirt, please share pictures on our Breathe for PCD Facebook page or on Instagram (#breatheforpcd) to let us know how far Breathe for PCD has traveled! https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1613705850084-N7KFJVOOC06R15UDU44V/121009006_787199945347577_1164876795098730982_n.jpg About - WHO is Breathe for PCD? This is Breathe for PCD. I am a mother to a PCDer. I ponder sometimes the differences in experience and perspective as a parent of a PCDer compared to a PCDer living with PCD. From the beginning of this journey I have clung to the image of health, and am extremely drawn to the stories of perseverance in spite of PCD, because I NEED TO in order to live my life knowing my son has a progressive lung disease. I live my life being a person prone to anxiety and depression. I don't watch the news or watch scary movies because I attach, personalize, and project every horrific story onto my family. Having a son with medical concerns, I have learned to walk on the edge of being aware and diligent but to not let my fears pull me off the ledge and swallow me. We have been extremely lucky so far in how PCD has presented itself in our son. He is NOT the sick kid. Somehow, he has managed to be the healthiest person in our family. According to him...it's because he does "treatments" and we don't. But for me, being the mother to a child with medical needs means living each day carrying the responsibility/burden of his health in our hands. It means being neurotic about reminding him to cough, spit, blow his nose, get exercise, wash his hands, hold his breath and move away from dusty air, smoke, other kids' sneezes. For those out there LIVING with this invisible disorder...I see you. For those parents of PCDers out there...I feel you. https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/51618a88-0902-4e04-ab44-639f0d66a8fe/IMG_2316.png https://www.breatheforpcd.com/a-face-for-pcd daily 0.75 2023-09-14 https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1613760150811-9FI9AMM09H8A6CARN2FN/151275361_767111677546922_7577649049253503294_n.jpg A Face for PCD - Our baby. The reason for Breathe for PCD. Within hours after birth, our perfect baby was sent to the NICU for pulmonary hypertension. Once we settled in to the NICU nightmare, in our hearts and minds we believed that, once we got through this hell, the worry and pain would be over. We were wrong. At one month old, our baby was diagnosed with PCD. Strangely, we are one of the lucky ones. Most people do not find out until years later, after permanent damage has been done. Besides the horror of the news that our baby had a lifelong, progressive disease, we soon were faced with the fact that there is no research on how best to treat our baby. Our daily regimen for preventative treatment is extremely time consuming and disruptive. But effective. When he is healthy, our preventative measures include two breathing treatments a day. (Pre-pandemic) Now that he is in school full-time he has to be up at 6:00 in the morning to fit in his treatment before school. His breathing treatments consist of an inhaler to open the airways, followed by 20 minutes strapped into a vest that vibrates and shakes loose the mucus to be coughed up. He also nebulizes a sodium chloride mixture to loosen the mucus and make the vest more effective. From day one, he has had a wet junky cough. This is normal for people with PCD. We call him the Master Mucus Mover to encourage and applaud his coughing and spitting, as this is an integral part to keeping him healthy. We were told that eventually his lungs will be colonized by bacteria resistant to drugs. This happened unusually early in his case. At age two, we were already unable to eradicate an infection called pseudomonas. We were instructed to try to suppress the infection with an inhaled antibiotic every other month...indefinitely. After several years of this, we were able to eradicate the pseudomonas. Many adults with PCD live with partial lung function and eventually require lung transplants. My baby with PCD got dealt a shitty card. Being that this is a genetic disorder, however, if he was not born with PCD, he would have been a different human. I could not have dreamed up a more perfect baby. Already he has revealed himself to us. Radiant. Determined. Adventurous. This is a battle that we will fight with him. The generosity and support of friends, family, and empathetic strangers, helps us to breathe easier. https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1613761302783-H7LT8FI5PRMQZSLIE8QG/2020+COLLAGE.jpg A Face for PCD https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/6f16466f-616c-45b8-b5a4-f61bc6c3ff54/10269431_10152363214149802_5202266075290258879_n.jpg A Face for PCD https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1202b26b-5c04-4798-ac29-1e71aba6e836/16406844_10211782496628727_2765887078984451871_n.jpg A Face for PCD https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/fafefc23-7b1d-4d8b-9ff4-9285cf7a4860/47384127_2067979029944315_2011049515011801088_n.jpg A Face for PCD https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/3901a178-71c0-4ee9-9415-15c8db4d1226/treatment5.jpg A Face for PCD https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/cad5c440-41df-42a9-9f5c-7464c01f0629/treatment10.jpg A Face for PCD https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/31418ec4-51a8-4654-b2a6-44c956eb81e5/42625748_1972961299446089_499506732339298304_n.jpg A Face for PCD https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/4737dc20-d029-4996-8179-0720d9a50662/117384307_3261731903902349_7457227819210057113_n.jpg A Face for PCD https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/0f7af7ec-ffb4-4333-8e7a-dc26e18327ce/147297790_3755581914517343_199232130046422074_n.jpg A Face for PCD https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/2788f277-0333-4a50-8d22-54d348690e3e/120771806_3436925409716330_5390091806995245547_n.jpg A Face for PCD https://www.breatheforpcd.com/pcd-strides-and-needs daily 0.75 2023-09-14 https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1613763032175-0RMD6MV4XID1BW12R5B7/123857605_3530696617005875_7255335651921877572_n.jpg PCD Strides & Needs - PCD Strides & Needs. STRIDES FOR PCD In 1991, the founder of the PCD Foundation was told that there would never be research done on the genes that cause PCD because it was too complex. Today more than 50 genes associated with PCD have been identified. Identifying these genes allows for better diagnoses and is critical for future therapies based on gene modifications. Another big stride for PCD is the creation of clinical centers across the country. Having clinical centers where PCD is a focus is necessary for people to be properly diagnosed, followed on a registry, and be able to participate in research. When the PCD Foundation was getting started in 2002 there were no clinical centers for PCD. There are now more than 40, with many more sites in process of joining the network. Additionally, two new centers focused on diagnostic services for PCD, Mayo Clinic and Children’s Hospital Colorado, have been accredited. PCD clinical centers will also participate in the PCD Foundation Registry (PCDFR), a critical data collection effort to help expand our knowledge of the natural history of PCD and identify potential targets for therapies to help improve the health and quality of life for individuals with PCD. A HUGE stride for PCD is the interest of pharmaceutical companies in doing clinical trials of their products in PCD. Two clinical trials specifically looking at treatments for PCD have been completed, and one (azithromycin use with PCD) has been published. The other, looking at a novel inhaled compound for thinning mucus, was recently published in the Lancet Respiratory Medicine. Both trials showed promising results and provide the foundation for additional clinical trials and regulatory approvals of treatments for PCD. To date, there are no approved treatments for PCD and all treatments used are borrowed from studies on other disorders. NEEDS FOR PCD There are still no approved therapies exclusively for PCD. Historically, PCD treatments are based on research for cystic fibrosis, or asthma, or COPD, but not PCD. These treatments may or may not be what is appropriate or best for the needs of those with PCD. The PCD Foundation has spent years developing a ‘Path to Clinical Trials’ with PCD expert centers and a registry to prepare for future trials of therapies that will improve quality of life and ultimately lead to cures for PCD. That future is now! Gene-based therapy trials to treat the underlying cause of PCD will be starting soon and multiple trials of therapeutics to improve quality of life for patients are currently underway. Now is the time to find better therapies and improve the lives of those with PCD! https://www.breatheforpcd.com/words-thoughts daily 0.75 2022-09-22 https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/1613764348160-8JRUXE1AOS726YRNEAJB/PCD+Mom+quote.jpg Words. Thoughts. https://images.squarespace-cdn.com/content/v1/602ee8a6f4a1980f34cc9420/58c2252c-6a4d-4b69-8803-fe2dcfa2c5a5/Bedtime+Musings.png Words. Thoughts. - Make it stand out Whatever it is, the way you tell your story online can make all the difference.